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Preventing Pandas/Pans in sibling


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I think I am starting to see some early signs of Pans/Pandas in my dd9. My son13 is my pandas kid-unfortunately not officially diagnosed, but has all the symptoms. And I think my dd16 had pandas, but outgrew it around puberty. She had had OCD from about age 3-12.

 

My mother in law just called me and said my 9 year old just asked her about how you get OCD, and told her she thinks she has it. She told her if she touches something, she then has to touch it with the other hand, and she is worried she will end up like her brother.

 

I've been worried about her for a while. She was always my sick kid-runny nose, cough etc. She never feels good, always says her stomach hurts, doesn't eat well, and a month or so ago came down with a weird case of cellulitis without an open wound. The doctor said she hadn't seen anything like it in her 30 years of practice. She never wants to do anything-just wants to sit on the couch and watch tv or play Wii. When she was little she had to be constantly on the go. In the past week, she did something that made me think 'ocd', but I can't remember what it was right now.

 

So I'm wondering if there is anything I can do to halt this before it turns into full blown OCD/pandas. Should I go ahead and have blood work done? I remember my ds starting out with a little ocd about the same age before his full-blown exacerbation, and I'm scared of what could be ahead for her.

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OCD for Pandas kids is a symptom. what you describe, if it is Pandas, is not an early version but a full blown form. symptoms can get worse, of course.

did you read pinned material? there is a list of blood tests there.

best strategy is to try to find a local dr willing to help you with tests, long term abx or IVIG.

you want to determine the infection that is causing PANDAS. strep is the usual culprit but it can be few other bacteria in which case it is a PANS. in many cases lyme is also involved.

and, at the same time, try to get an apt with a PANDAS specialist.

there are people constantly joining the forum and you may want to do a search to see what kind of case they had and what kind of advice they got.

best of luck

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I wasn't going to comment here, because I'm sure that many on this forum wouldn't agree with me but here goes..... I would not be so quick to jump to the conclusion that your daughter has Pandas. For one thing, one of the biggest defining markers is sudden onset. So, "early signs of Pandas"??? I don't know about that. The next thing to consider, is that there is a difference between OCD and Pandas. And don't forget, OCD does tend to run in families. You can have OCD, which can also present with depression, and therefore lethargy, and not have Pandas. Having OCD doesn't mean you have Pandas. Next, kids get sick. Period. Lastly, I would be careful not to project your fears onto your non Pandas children.... I say this with kindness and empathy... I worry about my son, but this is a RARE disease, and kids are very influential-- that's why therapies like CBT and ERP are effective, because our minds are "bendy" -- especially kids!! My son is just finishing kindergarten-- in the beginning of the year he had severe separation anxiety, and I can say, without a doubt, that that was about 90% MY FAULT. I am a stay at home mom, protective, and talked in front of him way too much about how the full day kindergarten (it was always 1/2 day in our town until this year) was going to be too much for him, that it was too long, etc. let me tell you that in looking back, I never should've whispered a WORD of that in front of him. If I hadn't, I'd be willing to bet that is wouldn't have been nearly as bad as it was.

We are all learning here, and I struggle every day with decisions regarding my daughter's condition. She hasn't eaten a regular meal in 7 months now, has severe ocd, rages, and a bunch of other symptoms that all came on in October, suddenly. But even with that, I am taking her for CBT with one of Leckman's colleagues, and they are still wanting to table this as "anxiety disorder/OCD" and leave it at that. (Her pandas doc thinks differently, and so do I). In trying to be objective, all I'm saying here really, to sum this up! Is to be careful, in what you say, and what you do. 9 is a VERY impressionable age (my dd is 9) and they DO hear EVERYTHING you're talking about, are easily influenced, etc. and don't forget too, that if you research OCD thoroughly, that almost EVERYONE, OCD or not, has rituals, obsessive thoughts, compulsions, from time to time that do not constitute a disorder or disease of any kind...most often, it's normal. Think back to when you were a kid and some of the silly and weird things you did (step on a crack, break your mother's back! Friday the 13th is an unlucky day!) --

With all of that said, who am I to say your daughter doesn't have it? I hope she doesn't. I'm not saying you should ignore anything, but I would also think twice before you start bringing her for testing, etc. and put something in her head that wasn't there either....and I do think that's possible, Especially after all of the research I've done on OCD and ERP. The brain is plastic, mold-able even. CBT & ERP are just THERAPY Methods, and can reduce symptoms by 60-80% in OCD patients that take to it. These therapies have been found to actually increase serotonin in the brain-- and that's amazing when you think about it. I'm not saying that it's effective for Pandas kids (hasn't worked for us yet!) but just giving you something to think about ;)

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Well, I have to say that early on my son probably had many minor pandas symptoms which waxed and waned with illness and colds, etc... However, having never heard of pandas I just assumed it was just him worrying too much, or just being over anxious. The slight tics he had I thought were nervous habits and I assumed my son was just a little quwarky or he was just being a kid. Anyway, looking back with the knowledge I have now I clearly see that that was the beginning of pandas. It was not until he developed a pretty noticible tic overnight and started with other obsessive behaviors that I realized this was pandas. And yes I remember the day and time of this particular episode so I consider that as our sudden onset, but sure there were signs earlier. I think we all would notice and catch pandas earlier in our other children. Once you have a pandas kiddo and know what to look for the signs can be pretty obvious. I don't think you are being over paranoid at all. This may or may not be pandas in your younger child but you owe it to her to at least try to do your best to investigate this and treat this and prevent it from getting any worse if necessary. Knowing what I know now I would be at the doctors office ummmm... Yesterday! This is just my simple opinion.

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Like I said, I'm not suggesting you ignore anything.... And you're a mom, and I completely agree that a mother's instinct regarding her children is usually on! I guess I'm just in an odd place with my own thoughts lately too. Researching ocd in conjunction with reading some of the posts here and going through what we've been going through with my daughter has left me with a lot of conflicting views on it all! OCD, by itself, is such a complex disorder that isn't completely understood. It can present with many symptoms and has a high comorbidity rate with other anxiety disorders, depression, etc. and is often difficult to differentiate from other coexisting disorders. If you research some of the scholarly articles on OCD and Pandas clinical trials there is a lot of conflicting information there too. My comments weren't made to be judgemental in any way, please understand that. But I do think that everyone on here should not only keep an open mind, but should be objective and use critical thinking when posting and reading others posts as well.

Best wishes to you and both of your children.... I can't imagine having 2 children with this disease, and I hope that's not the case for you.

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Things that are very helpful for PANS also might help prevent PANS.

 

I would look at issues like vitamin/mineral deficiencies, methylation issues, start her on some type of regular detox, treat everyone in household including pets for parasites every six month (Health Force Scram or Food Grade Diatomaceous Earth), jump on any obvious illness in household and a healthy diet that avoids anything boxed or bagged with lots fermented foods (Paleo like diet that is realistic for kids).

 

When anyone in our home shows signs of an illness we nebulize and bath with Food Grade Hydrogen Peroxide. There is a ton of information on-line on how to treat with hydrogen.

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Get the younger one prophylactic treatment antibiotics or homeopathy whatever modality works for your kids. We had 2 kids with PANDAS, one is now recovered pretty much, she gets a little OCD in the winter months. My son has autism and PANDAS he's better but still not recovered, still reacts and its debilitating. If they had been treated earlier they might not be chronic. The youngest one child #3 has to mild reactions to strep that I observed and reported her siblings were already in treatment and she got treatment. She has had 1 zithromax per week for the past 4 years and though she sometimes reacts to the strep or viruses that her siblings react to her reactions are generally appropriate fever sore throat or whatever - not in the brain, not raging, not ticking. Fortunately by the time you get to the 3rd kid it appears that docs listen, unfortunately for the 1st and 2nd kid help did not come in time. They will live with the memory and to a degree residual of the illness it for the rest of their lives most likely, stinks.

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beerea -- I can see that you are thinking under the influence of Dr you mention. He is very, very cautious and PANDAS boat, the one run by NIH, seems to have gone sailed from him once again.

My one question is what is a better diagnosis then PANDAS/PANS for you child or the child in the original post here?

being impressionable?

PANDAS/PANS names a set of symptoms and their possible etiology. When you say bi-polar, you only name symptoms and assume that a brain, or a personality, has that quality of being bi-polar. then you assume that you can mold that personality out of being bi-polar. That sounds so inappropriate if you child does have an auto-immune reaction.

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There is a high incidence of pandas in siblings ( including mine). I think it would be more unusual to see both non pandas ocd and pandas in a family. It took us a while to admit/ come to terms with pandas in our second daughter ( our oldest actually)- but eventually things worsened.

 

A lot of suffering can be spared with fast and aggressive treatment- so I wouldn't waste time in consulting a pandas doc.

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ditto on what dcmom said.

We have 4 siblings affected (there are several other, non-affected children). 2 were treated early with steroids and abx a few times . They are still young (6 &9) and at the moment, one only has tics that are recurring. The 6 yo even had scarlet fever & seems OK!

The older two required pex, ivig and a few years of tx and one is 100% and the other is a work-in-progress, but pretty darn close! (they are 14 & 16).

The factor to consider, I think especially in sibling cases, is a known autoimmune condition. trust me- your life and your child's treatment will be dramatically easier if you can find something besides PANDAS to diagnose.

My oldest daughter was diagnosed with another condition, that was likely a factor in the sibling's cases.

 

I could on back on the forum and find my posts about my 3rd and 4th affected children- they were very similar to your post, flmom. I went back and forth ("maybe it is just OCD", etc. Well, who knows-- but after Dr L worked some prednisolone magic, tonsillectomy (for one) & abx - a year later that OCD & panic my little one had is gone. Just gone!

 

I think that sudden onset is a bit tricky. My most severe child, honestly, one of the most severe cases, probably, now is able to tell us that she has OCD thoughts and behaviors beginning 2-3 months before her "overnight" onset. It looked overnight to us- as it exploded (eye dilation, urinary incontience, "exorcist" OCD) on Aug 26, 2008. Well, all that summer, she had started to suffer, but at 10 , kept it to her self.

She was the one diagnosed with AE and antiphospholipid syndrome. She was the first one sick and the last one to recover.

 

get it checked out, flmom.

 

One thing to add: at the neuroimmunology clinic we go to now, for AE, not PANDAS/PANS-- they have a high incidence of siblings and they recognize that, openly.

Edited by powpow
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Again, not trying to dispute anything, or tell anyone to ignore anything. Just respectfully suggesting that anyone in that situation proceed with caution ;) I've certainly been fighting the fight with my daughter's pediatrician, and with the office where she gets CBT, and am 99.9% convinced that my she has Pans and/or bartonella (as is her Pans doc) -- and I'm not suggesting that it doesn't occur in siblings, or run in families. I guess I'm just asking anyone in this situation to take a minute and try to view things objectively every once in awhile. Expand your research and consider all possibilities. I do also worry about my son....trust me. But I try to be careful about what i say around him, because he is a kid, and kids are partially products of their environments. The mind is powerful, and easily influenced. That's all I'm saying. ;) best wishes to all above, all that all of us want is for our kids to get better, and I do enjoy this forum so that we can all a support each other and bounce ideas and thoughts off of each other in pursuit of our kids health and happiness :)

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I agree and think it's a good point to consider all possibilities. Sometimes rightfully so we get a bit of PTSD ourselves. I had my youngest evaluated for pandas and everything came back negative. Her behaviors are completely different too than older DD, but she does have sensory issues and an immune disorder. No changes on prophylactic abx for her immune disorder though I will say enhansa seems to help with her attention. So for us we don't seem to have a sibling issue though of course others may.

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We tested our other two kids since I suspected that my DS13 was maybe pandas lite. He may have had a sniffing tic, was a bit ADHD, lethargic and was always catching strep. So we ran his numbers, his strep titers were well over 1000 and his Coxsackie was higher than PANS son. We treated with Azith and Valtrex and then switched to Clindamycin/Refampin and CBD Oil. He is doing GREAT now. On 4 sports teams, responsible for homework, falls asleep on his own (had separation anxiety), etcetera.

 

Regarding OCD and psychology. We made that mistake, thinking it was run of the mill OCD. My mom's family is German and they're all a bit OCD. We worked that angle until it was almost too late.

 

My advice: FIRST RULE OUT ILLNESS!

 

It's not the accepted/popular route, but if it is illness you can save your child a lot if pain. My son was homebound for a year and 4 months. We could have helped him earlier IF we knew this was an illness. His system became so broken.

 

Look up the history if ulcers. For years everyone believed it was stress and diet. No one believed it was bacteria. It's ok to be the pioneer and disagree with the "studies". Our kids don't have time to wait for this to be accepted.

 

T.anna

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